The Diminishing Return of Hope in Cancer Care: Part 1
A note from Charlie Coltman, CEO of Cancerlife:
Dan Goldman ended his life in February, 2015. He was a dear friend and one of the first users of Cancerlife. I will miss him dearly.
Hi, my name is Dan Goldman and I am going to die. I was first diagnosed with brain cancer at 13. I have lived with this disease for almost 30 years with yearly brain scans and tests. 4 years ago the cancer returned and last year I decided I didn’t want to go through my proton treatments anymore. It was an actually an easy decision. The hard part was explaining to my family why I want to stop fighting. For most patients, the fighting mentality is the right attitude to have. Cancer is not scary, it’s fucking terrifying. The thought of dying weighs on you almost hourly. Fighting assumes a certain level of pain and struggle with the idealistic belief that you will be triumphant. In fact, this mythical belief is something your family believes in more than you do. Everyone loves a hero that overcomes great odds and wins. Your family and friends are just as scared as you do and want to “ support you”. This is normal and I understand it. The thing that keeps you going is hope that regardless of odds you will be different. You are special…you are stronger than most.
But Hope has a diminishing return for some patients. Every brain scan, test, MRI and PET scan can be emotionally devastating. The uncertainty of it all is its own form of cancer…. eating at the mind. After 30 years dealing with my own cancer, the hardest thing is the lack of certainty that doctors provide. Asking “How long do I have?” to an oncologists gets you the same response as asking your parents or teachers when you are young “Is their a god?”…Who knows?.
In the frontline special on Being Mortal, Atul Gawande interviews 4 people and their doctors exploring how doctors struggle with communicating with their patients about they’re pending death. This hero/myth goes beyond just patients and their families but also lives inside doctors too. It seems to me that doctors who are some the smartest people since birth have been told they’re special and smarter than others. I feel like they also feel responsible for “saving their patients” against the odds. Against an overwhelming Cancer Army they will be Hercules. They will figure a way with the right combination of drugs and treatment they will win. Hope grows between patients, families, caregivers and doctors. With 10 Million plus Cancer Survivors in the USA alone, I cannot argue this strategy. It seems to be working.
In the Being Mortal documentary, I was struck by the complete admission that doctors lie to their patients when it comes to prognosis. What is sad that when doctors and patients finally do “level with each other”, its often too late. National statistics suggests that up to 40 % of patients die in the hospital when they wish to die at home. “Palliative Chemotherapy” is a new strategy of giving patient’s chemotherapy as a way to slow the cancer progression. But is keeping the warm sweater of hope on a patient in the patient best interest?
It is my belief that doctors should be required by law if necessary to disclose to a patient when they feel they have 30 days left. There should be a standard of care when patients body system functioning has reached a certain level that triggers this “disclosure”. Liver functioning is a good place to start, as this is the organ that all chemotherapy passes. I am no doctor but the point is still sound.
In the Being Mortal documentary, one of the patients explained that his last 3 weeks were some of best in his life where family and friends visited with him and expressed their love. Why isn’t this the norm? Why are their not more Living Funerals for cancer patients?
If you’re a cancer patient, keep fighting.
But always ask yourself, “How do I want to spend my last 30 days?” Keep a list of things to do…and do them before Hope becomes a 4-letter word.